Meet Lori Hartwell
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Age: 42 |
Originally published in Transplant Experience News Vol. 1, 2009
Lori was just two years old when her kidneys were damaged by a strain of E. coli. By the time she was 12, both of her kidneys had been removed and she was spending hours on dialysis each week to remove fluids and toxins from her young body.
She received her first transplant at age 13, followed by a second transplant at age 17, both of which were unsuccessful. The first kidney was rejected, while the second was infected with both hepatitis and CMV (a virus that can harm transplant recipients). In 1990 she received a third transplant, which her body accepted, and she has been going strong for 19 years.
In 1993, Lori was sitting at a red light one day when she realized how she could reach out to other people struggling with not only a chronic disease and the wait for a transplant, but also loneliness. At that moment, she envisioned the Renal Support Network (www.RSNhope.org), a national organization that instills health, happiness, and hope through informative, and often entertaining, patient-directed programs.
One of RSN’s most popular events is the Renal Teen Prom, which was inspired by Lori’s personal experience as a teen. Because she was on dialysis from age 12-24, she missed out on attending her high school prom and connecting with kids her own age. This motivated her to create a special experience for young people today. For the past 10 years, over 300 teens with kidney disease and their guests have come together for this annual celebration.
“You can have the best medications in the world and the best physicians in the world, but if you don’t have the hope to get out of bed, none of it matters.”
Through the Renal Teen Prom, Lori has given hope to a new generation, who can now identify with themselves as individuals, rather than young people with kidney disease. One story Lori fondly remembers is when a boy at one of the first proms said, “I didn’t know girls on dialysis could be so pretty.” This event is just one of the many ways Lori inspires hope—and a sense of acceptance.
Most recently, Lori felt driven to produce “Who Lives?”, a play by Christopher Meeks that reveals how patients were chosen for dialysis in the 1960s. After interviewing Meeks two years ago, she could see this play coming to life and knew that she had to be part of it. With patient-actors playing key roles, the show reinforces the message that people with a disease are fully capable of performing the same jobs as people without a disease. It premiered on World Kidney Day, March 12, 2009, in Los Angeles.
Looking back at transplant procedures over the years, Lori can see firsthand how things have changed. Today, laparoscopic surgery is available, and is less invasive than earlier methods. She has also been amazed at the evolution in transplant medicine and the advances made to reduce side effects and dependency on steroids.
Lori has learned how important it is to be proactive in your own health care and to understand your medications. She says, “Your kidneys are your master chemist,” and notes how important it is to stay informed on what your lab results mean and how your kidneys are responding to your medication. This is one way she says patients can help maintain a sense of control in their lives.
